Tag: ehlers-danlos syndrome

I thought I would give a little bit of insight into my life. I was going to say; “as an average spoonie”, but I don’t actually know if I am average. I think I do a little better than the average person with chronic illness, thanks to my upbringing with lots of sports, physio and nutrition, but again, it’s a spectrum. So how do I know? This is an average day in my life, and I am a spoonie, so there! Actually, my life changes almost every day, depending on pain and injury, as well as what I have going on, so I thought I’d pick a relatively quiet one, where I could write.

So, here we go.

7:00am: wake up and pull on some leggings, a jumper and some sneakers to drive BB to work (we share a car and it doesn’t make sense to pay for parking when we live pretty close). Feel pretty good because every day I’ve been getting thinner due to intermittent fasting, even though I haven’t moved on the scale. I guess I’m putting on muscle, which my body does way too easily for what I would like. Either way, it’s much better than being a blob for the better part of a year after surgery.

7:30am: Take a couple of minutes to descend the four flights of stairs, because my knee is somehow swollen and the patella is pulling to the outside – pretty painful and I don’t know why! Drink a black coffee with stevia on the way, and listen to BBC Dunia Pagi on the way back to practice my Indo.

8:00am: Arrive back at home and decide to address my knee issues instead of lying around all day waiting for it to settle down. Start off by foam rolling, then find Jessica Valant Pilates for Knees video and do that. It’s actually way better than I expected (because when you’re dealing with EDS you learn not to have any expectations, especially when it comes to something physical), and I can feel it really working my VMO, which is eternally atrophied, and nothing has been able to help. It’s the chief reason why I’ve had three surgeries on my knees to stabilise the patellae, and keep them from being pulled to the outside and dislocating due to overworked lateral quads. This video is probably the best workout I have ever done, and I have ZERO knee pain now! Frack yeah. Foam roll again to finish off.

8:30am: Turn the oven on and wash rice and put some sweet potato in the steamer with it while waiting for it to heat. Put the rest of the sweet potato in the oven. Having a little moment with sweety potates, since I found a recipe that makes them all caramelized and perfectly cooked, with minimal effort.

8:45am: Got on my stationary bike to do my usual hour of low intensity cardio, while watching Return of Superman. Find it’s easier than usual and I don’t even realise the hour is almost up. Nice.

9:45am: Shower and put on extra moisturiser since my skin is sucking everything up immediately, although has also been oilier..which means I gotta get some more hydration and repair, I think. It may just be changing my eating. We’ll see.

10:15am: Marinade chicken and make raw zucchini, pine nut, red onion and feta salad. Sweet potatoes and rice are ready…except for the steamed ones. Dang. Will have to find another recipe. Make my brekk and clean kitchen.

11:30am: Time to eat!

One slice of black pudding

One egg,

Leftover zucchini bits with nutritional yeast

Half a cup of rice

1/4 sweet potato

Zucchini salad

Bone broth spicy mushroom soup

I usually eat something like this after breaking my fast, with aloe vera juice, apple cider vinegar, lemon and soda water. Also trying to finish off this giant pack of fake Yakult we got from Hanaro Mart, which I suspect doesn’t actually have any probiotic qualities. Clean up the living room, and take my supps.

12pm: Check on my ma since she was in hospital and is going interstate tomorrow after her work laptop crashed, then read through a contract for work.

1:30pm: Start copying an old Miley Cyrus look since I’m out of practice and people say I look like her (what they leave out is obviously a chubbier version lol). Burn myself trying to curl my hair because I suck at it and damage and kink it up, only for it to return to complete straightness within an hour. Everything looks greasy and terrible, and my back is cramping like a binch trying to take photos. So, abandon it.

3:30pm: Feel super gross with all this makeup on my face. Not sure if it’s because of fibromyalgia, or if I’m just spoiled wearing good BB cream all the time, but I can’t stand layers of makeup anymore. It feels awful. Really want to wash this off, but I have to go out later.

Finish the zucchini salad, while blinking through the pain. What pain you may ask? For some reason I kept getting ulcers in my mouth recently, until I switched to using Lush Boom! Toothy Tabs, which works insanely well, and don’t make my mouth feel burned or unclean by the time I wake up like normal toothpaste. The ulcer boys are almost gone, but the red onion in this is spicing me up and burning my mouth raw (even though the actually spicy soup was fine lol), as well as burning my nose somehow. I’ve never had so much trouble with foods and products until the past couple of years, and it’s a never-ending trial of different ways around it. Take off my contacts and fake lashes at least so I can chill out a little, then start writing this.

4:40pm: Go pick up BB and get groceries, then have to go home because my back and neck are hurting like crazy! I didn’t even realise, but today is the first day in a while I haven’t had to take my medication in the morning as well as at night, but I’m definitely feeling it now. Picked up a natural deodorant that seems to have good reviews, so I’ll see how that goes.

Saturday, 22nd September: I had to take Gabapentin when I got home and forgot about writing. Such is the life of a spoonie, I guess. Now I can’t really remember most of what I did, even though it was just a few days ago. Probably not much different to what I usually do: make dinner, stream something while BB works, do some more work until brain fog hits and it’s too late for coffee, practice Korean and Indo, maybe draw something.

This week in general has been pretty good, though, I’ve been working steadily and quickly on a few different contracts, fasting intermittently without any problems, and somehow building way more muscle than I’ve actually been working for. Until yesterday, I felt like I was finally getting back to stability. I say until yesterday, because that morning, I suddenly realised I had a lot of trouble with the stairs again, and even to text on my phone with both hands, I needed to prop myself up on the kitchen counter. All my muscles felt fatigued, and 30 mins on the bike was almost more than I could manage.

After working through the morning okay, albeit shivering and my fingers stiffening up from a bit of a breeze outside (for some reason, my Raynauds kicks in when it drops just a couple of degrees lower than usual, and makes my fingers in particular super stiff and cold), I had to call it quits by lunchtime. So, I guiltily spent the rest of the day finishing God of War 3 and watching The Good Place on Netflix, eating Halo Top, until I picked up BB and bought groceries. Then, I guiltily sat on the couch, while he made dinner, feeling like a trash can. I picked the wrong time to wean off pain killers to help with my liver, with shark week coming up, as any kind of hormonal changes cause massive flare-ups for me.

Anyway, this has been a pretty long, dry, post with a crappy photo of my breakfast to break it up, so I’ll add this:

BB just told me that they’re bringing out an Invader Zim movie!!??!?

If you don’t know what Invader Zim is, it was a creepy cartoon on Nickelodeon in the early 2000s, which got cancelled for being too creepy. It’s about an alien who is banished to Earth under the pretence of colonising it, along with his defective robot. It’s my favourite childhood show, and shaped my humour. Nobody else I know likes it except my dad and brother, and think I’m weird, but I must have watched each episode at least five times. Finally, they’re making a movie, and I could literally cry, I’m so excited and vindicated (well, we’ll see how it is when it comes out). Fun fact: the voice of Zim is actually Daggett from the Angry Beavers! Yeah, I’m an old boy.

Not only that, I’ll leave you with some memes I found hilarious and/orthis week at 1AM by myself, which means they probably aren’t actually that funny.

In yet another somewhat embarrassing post, I’m going to keep going with this authenticity thing.

I find that I get really excited when I find someone even mentioning things I’m always trying to find answers for that aren’t sanitised beyond usefulness. I think either most people don’t want to admit or tell the full story about their situations, or they go overboard and go down a rabbit hole, and spin out into a negative outlook for their life. There’s nothing wrong with being private, of course, I myself am a very private introvert, and I do understand why people don’t want to show the most vulnerable parts of their lives, but when every person is pretending something isn’t an issue for them, it makes everyone else feel more and more isolated and alone. So, I’ve decided to share what I can, without being too personal, in the hopes, as always, that it could be useful.

Now, this may be a somewhat misleading title, because it implies that I have a definitive answer for how to make money or survive in today’s world with a chronic illness. I don’t. Let’s just put that out there. But it does tie in with what I want to say about it, which is this.

I have always thought that I was an unreliable person. But how could I explain all the times when I was super focused, super organised, on time, and perfectly scheduled (only for it to fall apart after a week or two)? I didn’t even consciously realise until recently that it was actually part of being sick. I could be ‘on’ for a few weeks and wonder why I’d been lazy and go above and beyond until I inevitably crashed for a few days, or a week, or more, and friends, family, school and work would become frustrated with me. Wondering why, justifiably so, I wasn’t my usual self and coming to the conclusion that it was a psychosomatic thing, or me being self-indulgent or lazy, or a moody bish. How could they know, when even the many doctors I would see couldn’t explain?

The fact is, that I cannot be relied upon, whether I feel that’s unfair or not. That’s just the reality. I’ve been working with my doctor and job centres to try and find what I actually can do, since, obviously, I can’t just do nothing with my life. I am a qualified Beauty Therapist, but there is no way I can be on my feet all day, let alone massage or hunch over to do nails, so what kind of salon would want to hire me? Everything, including my current studies are on hold at the moment, on doctor’s orders, for the same reason; I can’t foresee when I’ll have the energy or brain function to get out of bed or even read more than a couple of sentences over and over while absorbing nothing, or when I’m able to do it all and clean the house and do the shopping and exercise and whatnot. That is a huge issue when I have an exam or deadline for something, because my body doesn’t give a ship when it goes into meltdown. How can I possibly expect someone to hire me when I will randomly be fine and then the week after I won’t be seen or heard from?

Well, I don’t expect that, at all. It’s not fair to them, and the amount of stress and guilt I feel for it doesn’t help me, either, as stress makes all my symptoms worse and sends me right into a flare, which means I’m even more useless.

So, my decision is to do what I can. I had to sit down and face this, and ask myself exactly what I realistically thought I could do – maybe for the rest of my life, maybe until I can get things under control (if that’s possible). The answer to that is that there’s no one thing. If you’ve been reading any of my posts, you’ll realise there are gaps between my posting and activity, not only because of being ill, but because of self-doubt; that anyone would actually be interested in anything I put out there. But if I can look at the things that engage my passion, that I find I am able to do most regularly, it would be:

Playing video games – I’m not very good at them, but they’re something I’ve come to find I love, and that I can do when I don’t have the energy or mental capacity to do anything else, and yet feel like I’m at least not doing nothing;

Writing – Apart from sporadically writing posts here, I’m currently working on a couple of books that I’m trying to figure out how to publish and illustrate for;

Makeup and skincare – something I didn’t just study for, but also keep up with and have an active passion for;

Cooking and nutrition – another thing I constantly read about and try to learn about, as well as try out. This is difficult however, as I find if I spend an hour cooking, without even factoring in the clean up, I’m absolutely done for the day. No writing, sometimes not even video games-done;

Languages – I am obsessed with learning languages. If anything, it’s my hobby. I’m currently actively (as opposed to the other languages I’ve put on hold) learning Indonesian, because my fiancé is Indo, and Irish, since I’m basically 100% Irish, according to DNA tests, and I find it sad I don’t have any cultural identity;

Exercise – this sounds ridiculous for someone complaining about not being able to do anything, but even if I can’t get down the stairs and have had to take a break from everything due to tendinopathy in my knee at the moment, I can still usually do an hour on my stationary bike almost every day, and have a whole book of physio exercises I not only want to do, but have to do every day to stop my muscles atrophying immediately, or dislocate;

History and mythology – I suppose this ties in with the writing point, but I am obsessed with history and folklore, especially ancient, and almost had an existential crisis when I watched Loepsie’s video on how she was doing Celtic Studies – something I never knew was even remotely a possibility. If I had known that 10 years ago, my life would have turned out very, very differently;

Film – I love film, or good TV, I love being able to experience the way something was shot, or how a story was told, and let’s face it, when you are chronically ill, you spend a lot of time watching TV because you’re unable to do much else, but you still can’t sleep, dang it! >:|;

Travel – before even leaving my hometown as a child, I wanted to travel the world constantly, and even though it’s very difficult being ill, the amount I have been able to travel in my life already has shaped me into the person I am, opened my mind, made me more tolerant, and given me a wanderlust for the rest of it. I actually already made a video about our trip to Japan a couple of years ago, and am making a new one on our last trip to Melbourne. It’s something I wish could actually be my full time job, as I never want to settle in one place for very long

What in the heck would I even be able to do with these things? Traditionally, probably not much, without doing a degree overseas in history and then not having much of a field to actually work in, for example. However, I figure if I combine them all into what I’ve already started here, and make that my full time job, that’s the best thing I can think of doing. There has to be other people who share the same interests as me, who want to learn about things I possibly know about or want to listen to, read or watch my experiences, right? That’s what Youtube, blogging and any social media platform is really about.

I have no idea how to approach it, but regardless of whether I am able to get and hold a ‘real’ job (god, you have no idea how depressing it is to write that sentence), these are things I would be doing anyway. So I might as well try to make something productive come out of them. Having written it down now, it sounds like the kind of advice people always give: “follow your dreams, guys! Follow your passions, and you’ll never work a day in your life!” – ugh. But I guess it’s a good place to start, when you don’t have the energy or capacity, as lame as it feels, to do anything else.

So I guess you’ll be getting to know a lot more about me, if you’re interested in the same things, and actually want to continue reading. Thank you for reading so far! Even if I’m just yelling into the void, my only option at the moment is to continue.

xo, Lo

Woops! *Edit: I forgot to add to the list: singing and music – talk about brain fog, I studied this my whole life and almost made it my career (ha! I’d be better off trying to hold onto a high-paced sales job), but when my jaw isn’t playing up, you’ll find me singing along to any and all music

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About Me

Hi!

I’m Lola, a qualified Beauty Therapist based in Australia. I have Hypermobile Ehlers-Danlos Syndrome, and aim to live the fullest life I can, while managing my health issues. I hope I can help others who are dealing with similar things!